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Right or wrong?: A world without Down's Syndrome

Chris_ScopeChris_Scope Member Posts: 695 Pioneering
edited October 2016 in Learning difficulties

What does 99% accurate test mean for Down’s Syndrome?

Last night on BBC2, British actress Sally Phillips examined the ethics and potential impact of a new non-invasive test for Down’s Syndrome during pregnancy.

The documentary, ‘A World Without Down’s Syndrome’, was prompted by the introduction of the NIPT pregnancy screening test, which can detect Down’s Syndrome in pregnancies with a 99% level of accuracy, and the prospect that it may become available on the NHS in future.

The documentary explored what widespread availability of the test could mean, and asked, “What sort of world do we want to live in, and who do we want in it?” With 9 out 10 British women currently terminating pregnancies after a positive diagnosis of Down’s Syndrome, according to the BBC, the likelihood that very few babies with Down’s Syndrome could be born in future has been raised.

Phillips, whose acting credits include the Bridget Jones films and TV comedies such as Smack the Pony, has a son with Down’s Syndrome, and so for her this exploration of the ethics of pregnancy screenings was a personal one.

Did you see the documentary? What do you think about the issues raised? Is wider availability of pregnancy screening tests such as NIPT beneficial or detrimental to society? Share your thoughts with the community and join the debate by commenting below.  

Replies

  • RobsRobs Member Posts: 49 Courageous
    The choice of termination should made by the women carring the baby, it is after all her body and most of the care will be on her shoulders. The worry is however, where do we draw the line? these tests will lead to other disabilities in the unborn babies, being diagnosed. 

    Will women be offered termination for babies with a Kyphosis or club foot, the list is endless.

    This could lead to a final solution, covering all disabilities. 

    The government clearly hates the disabled, so they will probably incourage termination.
  • lottie42lottie42 Member Posts: 3
    Totally agree. Personally having nursed some very disabled children I prefer the word 'enabled' and I don't think all this is right at all. It's designer babies to me and ethically wrong. When I was pregnant I was offered extra tests at just 32 because I was an 'older' mother and more at risk. I told them politely what to do with their risks and tests and said nothing would make me change what I did, I was thrilled to be expecting and God creates life so no one else should be able to take it away. 
  • tracywildtracywild Member Posts: 1
    I think last night programme was amazing...but in all fairness as a mother of a young man with DS I got angry and upset...as I still am...I think Sally needs to do a follow on documentary and get inside the families with DS children/adults....it was very informative about screening... but we need to put it out there that it's brilliant thing to be part of and live with....my son would love to tell people how happy he is xx
  • quinrahquinrah Member Posts: 24 Courageous
    Hi @Chris_Scope I was very pleased to see these issues raised and discussed in the mainstream media in such an appropriate and sensitive way. Well done to Sally Phillips and the team involved.
  • onyeeonyee Member Posts: 10 Connected
    for me, as the parent of a young man with DS i am left wondering just what it is that is so awful about ds that so many people are so scared of it that they choose to terminate the pregnancy.
    so many people people do this on the basis of its not fair to the child.  says who?  not fair on the parents maybe, but who has the right to determine which life s more worthwhile than another? i am also a foster carer and currently look after a small child with CP, something she is very definitely not happy about, but not somehting that can be screened for prior to birth and yet leaves her probably more disabled than my son is, though admittedly she is less affected intellectually than him.  maybe thats the difference?  this little girl doesnt have an obvious learning disability, but people with ds do.  is it the idea of disability that is bad, or the idea only of some disabilities that is bad, ie the ones that affect intellect? would someone who would terminate the lfe of a child with ds do the same if the 'only' problem were a cleft lip and palette, probably not, not quite imperfect enough.  or maybe a child who is visually impaired but not cognitively impaired, again, grey area, probably not imperfect enough to terminate.  but a learning disability, well thats just too awful for any child to have to live with.
    hmph.  rambling.  i just hate that there are so many advances made towards 'curing' ds that are actually not a cure but a diagnostic test that leads to an otherwise healthy child losing its life in order to 'cure it', or is the'cure' actually to rid the world of a significnat minority population?
    ps, i got quite cross with teh progrmme at times!  can you tell?!?!
  • abstractLucasabstractLucas Member Posts: 79 Connected
    Playing devil's advocate here (and having not seen the programme yet) I'd like to pick up on the point about the test being used not only to identify DS, but also other disorders. I think (and again I'm not certain of this) it can also be used to identify at least a couple of other chromosomal disorders which are officially termed 'incompatible with life'.  How do people feel about this?  If the child you were carrying was unlikely to survive to birth, and if it did survive, live for only a moment or two, would you feel differently?  In that case, wouldn't you want to know?  What I mean is, as anyone who has been pregnant when they have another small child knows, pregnancy can be (physically and emotionally) hard work!  I gave birth three times within 30 months, and had I known that the pregnancy had absolutely no chance in resulting in a child - a sibling for the child I was too tired to take to the park and kept having to leave alone while I threw up from the intense morning sickness and was too big to hug tightly against me - would I have continued that pregnancy?
    I know that there are plenty of stories of babies surviving when they aren't expected to, and being very different from the predictions, and I don't want to get into that - I'm talking about conditions that mean this unborn baby will not live after birth.
    Also, I know that there are many many individuals out there with various conditions including DS who very much enjoy their lives and experience personal fulfilment, but what about those whose lives are filled with intense pain (physical pain) and repeated surgeries and medical procedures and with little or no awareness of the world around them, and who will be unlikely to live past childhood.  
    Personally, I feel very strongly that choices about pregnancy should be made by the pregnant woman and those she chose to involve, in consultation with medical professionals, and access to realistic and accurate information.  I would absolutely defend the right of any woman to refuse any or all screening or diagnostic tests, but I would also fight to defend a woman who wants such a test, and a woman who makes the choice to terminate or continue a pregnancy based on the results of any test.  I think it's very easy to say 'oh I'd do this this and this if I were you' but how can any of us know ALL the factors involved with a woman making any choice like this?  I think tests - both screening and diagnostic - should be offered as and when appropriate, alongside good quality information and opportunities to speak with trained (neutral) counsellors about choices and what the long term implications of those choices are.  
    I think one very significant issue is the seeming expectation that if a test indicates or confirms that an unborn baby has a given condition - for example DS - that this result automatically means a termination will be arranged.  From conversations with others who have had these types of tests and chosen to continue with their pregnancies, the attitude of medical professionals (not the fetal medicine specialists, more the general ones - midwives/heath visitors etc) was complete surprise and disbelief - 'so you're SURE you don't want a termination?' at every subsequent pregnancy check up for example.  I think this is hugely disrespectful, and should absolutely not be happening.  Whatever decision has been made by the pregnant woman is her decision, and should be recognised as such.  Too often it seems that women are expected to terminate, without being given the opportunity to talk about (and hear about) the positive things, the support organisations and so on.  This expectation - that's a problem! 
    I'm rambling now, but would be really interested to hear what others think.
    Lucas
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